Hello! I'm 26 years old and was just diagnosed this week with TN. I was lucky in that the attack had only been going on for a week before I was put on gabepentin (Neurontin). The gabapentin seems to be helping at the moment and I have been doing my own dosing schedule but my doctor wants me to try 300 mg every 8 hours. I think it's too long between doses. It normally lasts around 4-5 hours so I have been doing 200 every 4 hours and it's working pretty well.
Anyway, as my user name suggests, I am a student, a nursing student to be exact. This couldn't have started at a worse time this semester as it's coming to a close which means papers are due, exams are coming up, and the like. I'm hoping I can make it through clinicals next semester. We shall see.
When I was first getting the pain, my first thought was that death would probably hurt less as it was waking me up from sleep and I was crying because of the pain. Then I read about its nickname being the "suicide disease" and thought my initial thought was very apropo. Then I found this group and saw how I was using the exact same language to describe the pain, even down to calling the non-severe pain "twinges" and using lidocaine solution to help when the medication wore out.
I'm glad I found this board and I hate that we are all suffering with this.
Welcome to the group! Sorry you have to meet us all like this though.
Hi studentNpain...I am so very sorry that you are going through this awful disease but let me assure you that if you were diagnosed so early then you must be dealing with someone who knows about it! In all the research that I have done and from experience I've found that a muscle relaxer helps as well so that is something you may want to discuss with your doctor. There is help out there and for some , medicine helps but as for me it only helped a little while and then stopped so if it feels like it's no longer working tell your doctor..if you experience any new symptoms or side effects tell your doctor and don't wait! Interacting with people who have or are dealing with this helped me a lot, because while my family has never down played my pain they can't really relate. My teeth are really really sensitive which has made eating and drinking for me a nightmare but my dentist without hesitation gave me a lidocaine mouthwash that helped me. I know what it is like to be shocked out of your sleep with unbearable pain or to cry uncontrollably because their isn't really anything else you can do so if you ever need to talk or chat or even email I'm available! I don't mind giving you my number..my email is ■■■■■■■■■■■■■■■■■■■■■■■■■ and I am on Facebook under my name LaQuisha Rucker-Fields..I am in oovoo...I hope this helps you!! Sending blessings and encouragement to you...
My doctor was hesitant to diagnose at first because of my age. She REALLY wanted it to be a sinus infection or a dental problem. But you can't argue with an x-ray. I also told her on my first visit, which was a Thursday, that I thought it was TN. After the antibiotics not only weren't helping the pain, but the pain was getting worse, she had no choice but to do some research herself and she came to same conclusion I did.
I AM very lucky she believed me and acted so quickly. The next time I visit her, I'm going to ask her about seeing the Scleroderma Center at Johns Hopkins as TN can also occur with Scleroderma, which is also somewhat of a working diagnosis I have.
Thanks for the welcomes and trust me, I will be venting a lot as finals come around and I can't sleep more than a few hours at a time. Speaking of venting. I have an exam tomorrow that I should have started studying for over the weekend but didn't really touch until Tuesday, after having the gabapentin. <sigh> Here's to hoping.
I actually had an appointment with a Dr. Lol at John Hopkins but cancelled it because I found a neurosurgeon closer to me in Nashville that I am absolutely in love with because of how him and his staff treated me on my very first initial visit! He didn't try to push me off on another doctor or another medicine but was genuinely concerned about getting me pain free! The first neurosurgeon I saw pushed me off to a Ear, Nose & Throat doctor at my consultation because my MRI showed a sinus infection although I was having no problems and after getting it cleared refused to see me again! I pray you relief enough to study and get through your finals!! Good luck...
I'm in Baltimore, so Hopkins is an obvious choice for any rare disease.
My MRI was perfectly normal, as are most of my tests. That's the most frustrating thing about some of these diseases. There are no specific, reliable tests for them.
I hope if you ever need to end up with MVD surgery,
that you would get dr. LIM
John Hopkins !
Welcome seems the wrong sentiment but hey, welcome! I've only been here a couple of weeks but boy, have I learnt a lot!! I hope you continue to keep your pain at bay (more or less) and good luck with the studies.
That should have been Dr. Lim..dang spell check...
more2loooove said:
I actually had an appointment with a Dr. Lol at John Hopkins but cancelled it because I found a neurosurgeon closer to me in Nashville that I am absolutely in love with because of how him and his staff treated me on my very first initial visit! He didn't try to push me off on another doctor or another medicine but was genuinely concerned about getting me pain free! The first neurosurgeon I saw pushed me off to a Ear, Nose & Throat doctor at my consultation because my MRI showed a sinus infection although I was having no problems and after getting it cleared refused to see me again! I pray you relief enough to study and get through your finals!! Good luck...